8.23.2010

Our Heart Story

My friend Stef is having a "Heart Stories" party over at her blog today. Some of you have been on this ride with us since we found out about Derrick's heart, and some of you are new. If you've been along for a while, we're so thankful for you and your prayers for our little man. They've been what's gotten us through this crazy ride. If you're new, we hope you'll stick around so we become friends. We love the support and connections this blog has brought for us and we love sharing the funny, scary, and everyday things we go through as we raise this silly boy we call D.

~~~~~~~~~~~~~~~~~~~~~~~~~~~

Shortly after celebrating our second anniversary we found out we were going to have a baby. We were ecstatic! The pregnancy was perfect...I wasn't sick, wasn't worried. I felt fine other than being worn out by the time I got home in the afternoons. Everything was going exactly as planned.

Until week 24.

At the 20 week ultrasound (where we found out we were having a little boy...Derrick!) we were told that they couldn't see all of his heart. They told us that they would do another ultrasound at the next appointment and hopefully he would be cooperating then. We were completely fine with that because it meant that we would be able to see him again soon!

When it was time to go back four weeks later, I began to get a little nervous. It felt like a lot of pressure that they were only looking at Derrick's heart. What if he didn't cooperate? I don't know that I felt that something was wrong, I just felt pressured.

When the ultrasound started we got a quick peek at our little guy's face, then the quest for checking his heart began. After what seemed like forever, we asked the tech if everything was ok. She said that he still wasn't cooperating and she was going to get one of the other technicians who was good at getting the babies to move to come help her.

You could feel the tension in the room as both girls watched the monitor as they continued to slide the probe all over my belly. Finally they finished and again I asked if everything was ok. "The doctor will talk to you," one of them said.

We still weren't worried, but did think that the whole experience was a little strange. After what seemed like forever we were called into the doctor's office. We sat down across from him...this still makes my heart race...

"There's something wrong with your baby's heart," he said.

At first I thought he was joking. I have no idea why I thought he would joke like that, but I quickly realized that he wasn't. I felt the blood rush to my head and my whole body was on fire. I couldn't breathe, much less think. Justin and I looked at each other and I couldn't stop the tears from pouring down my cheeks.

My doctor said he wasn't sure exactly what was going on and that he didn't want to tell us something that wasn't right. He said there was a great possibility that we would need to deliver at the Medical University of SC in case our little guy needed heart surgery right away. He made us an appointment for the next afternoon with a pediatric cardiologist so we could find out exactly what was going on.

I don't remember a whole lot about the rest of that day. I was devastated; we both were. All I could think about was that this really couldn't be possible. This baby was moving around inside me all the time. He kicked and squirmed, he had the hiccups and he got wild and crazy when I would eat chocolate. He had to be fine, I would tell myself. But I would catch my mind wandering to dark places...things I didn't want to imagine, that I couldn't bear to think about. But I did. I had only heard of one heart defect: HLHS. I didn't know much about it other than it was not good. When I was in college a classmate's niece was born with HLHS and I had followed her story very closely. It ended in heartbreak, and I prayed (or maybe begged God) that Derrick didn't have HLHS. Looking back, I'm pretty sure my fascination with Miss Emily Mae and her story was no coincidence. I think Someone was gently preparing me for my own journey.

The horrible day finally ended and we found ourselves in the parking lot of the pediatric cardiologist's office. I don't think I even realized we had such a doctor in Columbia, much less ever thought I would be going to see one. But here we were, both of us sitting, neither had the courage to open the door and get out of the car for fear of what they would tell us about our son. We held hands and Justin prayed. He prayed that we would be given hope during this visit and that there would be something they could do for our son.

We had an echocardiogram

We had asked God for there to be something they could do to save Derrick's life. Obviously numbers two and three simply were not options. Derrick's heart didn't fit nicely into any specific congenital heart defect, but he told us it was not HLHS. Similar, but not HLHS. We didn't leave that appointment with a specific diagnosis, but we did leave with hope.

Over the next four months we went to appointment after appointment. It seemed that every time someone looked at Derrick's heart they told us something different was wrong. It was heartbreaking enough to know that his heart was broken, but to hear something new every time someone looked at it was really hard to deal with.

There were many, many tears shed for this child, and even more prayers said. We painted his room, bought his furniture, had baby showers and created a perfect little nursery. His clothes were washed and hanging in his closet and folded neatly in his drawers. His toys were in a basket and his blankie waiting for him in his crib. As we did all of this preparation, sometimes I had a terribly heavy heart. Sometimes, secretly, it killed me to prepare for his arrival. I was so afraid that he would never come home. I was afraid that he wouldn't wear the clothes, sleep in the crib, or hug his blankie. Not always, but sometimes it was simply too overwhelming.

April rolled around and it was time for Derrick's arrival. At

6:31 pm on April 20, our little miracle, Derrick Palmer Carter, was born. I held my breath as I listened for his cry. That first cry was, to this day, the most beautiful sound I've ever heard.

Derrick was immediately taken away by a pediatric team and Justin was able to go get pictures so that I could see him. About an hour later, he was brought to my room for us to get a quick peek at him. I finally got to see my beautiful baby boy. He looked perfect. It would have been impossible to know that anything was wrong with him if he wouldn't have been in the incubator. We were able to open the tiny door to touch his sweet little hand. My arms ached to hold him, but I knew better than to even ask. After a few minutes, my brand new baby was taken away.

The days went on with testing, echos, blood draws, questions, and learning more about Derrick's "complex little heart" as the doctors called it. We shed many tears, said many prayers, and spent many hours by our little man's side watching monitors and listening to the beeping of the PCICU.

When he was four days old, we were able to hold him for the first time. We were told that we wouldn't hold him until the night before surgery, so this was a great surprise. When the nurse put him in my arms I lost it. The world could have crashed down around us and I wouldn't have cared. I was holding my baby! I cannot describe the overwhelming emotions I was experiencing. You will never understand how it feels to have to look at your baby and not be able to pick them up to comfort them when they cry, or to simply cuddle with them, unless you have experienced it yourself. No parent should have to feel this way, but at that very moment it was all worth it. Derrick was finally in my arms, and there was nothing better!

Four days later it was time for his first heart surgery, the BT Shunt. That morning we gathered around his bed, took pictures of him, touched him, prayed over him, and talked to him. All I could do was cry. Even in my silent prayers, all I could say was, "Please, God." There were no other words that would come to my mind. All I could do was beg God to bring Derrick back to me. That day, April 28, 2009, I did the first most difficult thing I had ever done. I sent my precious, tiny baby away with two complete strangers for open heart surgery. Watching his tiny body swaddled in his crib, hearing the click of them unlocking it, and watching him disappear down the hallway was grueling. I collapsed in Justin's arms, and we cried.

Surgery took (a long) seven hours but went very well. Seeing him for the first time after surgery was difficult, but under all of the tubes and wires we could still see his precious face.

Derrick's recovery was great and he was discharged from the hospital when he was sixteen days old; a short eight days after his first heart surgery. We were amazed at his strength and determination, and so very thankful that God had blessed us with a smooth recovery and HOPE that Derrick would be ok.

Being home was nice. It was pretty scary at first, but we adjusted quickly. Doctor's appointments filled our weeks and we lived life to the fullest, knowing that another surgery loomed in the very near future.

When he was six months old, Derrick spent three nights in the hospital for at UTI that made his oxygen saturation drop really low. Around this time he also started feeding therapy for his inability to gain weight. He was, and still is, very small for his age.

After the UTI episode, we walked on pins and needles waiting for the time for the Glenn surgery to come. He had two heart catheterizations to see if he was ready for surgery, and after the second one they determined that it was time.

Two days before his nine month birthday, we handed Derrick over for surgery once again. It was no easier than the first time, but just like before, we could feel the prayers from friends and family and the peace that only God can provide. Again Derrick's surgery and recovery both went well. He only spent one night in the PCICU and was moved to the floor the next evening. He spent a total of eight days in the hospital, but the length was due to having a chylothorax. His heart was great but he had to be put on a fat free diet to allow the chylothorax to heal.

Since the Glenn, Derrick has done exceptionally well. He celebrated his first birthday, walks runs all over the place, talks non-stop, is full of energy, and loves attention!

This "heart world" life is definitely not something we would have chosen for our family. If we could, in a heartbeat we would take away all of the pain and suffering that Derrick has experienced and all that is to come for him. However, we wouldn't change a thing for us.

Having Derrick has deeply strengthened our faith. Having to fully rely on God; to have no choice but to give Derrick completely over to Him has been a very humbling experience. It hasn't been easy and I still catch myself trying to control our situation, but I am quickly reminded that I have no control and God has all of it planned perfectly. This heartache has been a blessing beyond our wildest dreams. We have been blessed with one of the most amazing miracles and we won't take that for granted for even one second.

Brought to tears! Oh Shannon. Reading your words brought it all back so fresh. I never even thought that it was possible to share the same physical sensations when you receive news like that, but I vividly remember the exact same reaction!

What a beautiful post!!! I love little Derrick's adorable face and will love following his amazing journey from now on! Thanks so much for reading about my Drew. I love that Stef has done this for our community!! :)

I was reading through tears! I love how so many of us have followed each other for so long, but never knew the full story. The emotions you described when you found out were the exact same things we felt. It is just so incredible to know so many others now who we can share our journeys with. When we found out we felt so alone. It is so nice to find support, no matter how many years later.

I loved reading Derrick's story...perfect timing for me to start following your blog! There we so many similarities in your story and ours, I guess we all have something in common with our heart babes. Derrick is so precious and sounds like he's doing well! That's awesome!

God bless you and we'll be following along!Heart hugs,Katie (Maddie's mom, HRHS)

Ive been following Derrick's story since before my son was born. It comforted me many nights while I lie awake worried sick about my son's future. Derrick is so amazing and I will keep him in my prayers. I look forward to watching him grow up via your amazing blog. Thank You.